Archives for March 2020

The worst part is the boredom

March 29, 2020 3 Comments

The worst part is the boredom, the words many of my friends and family heard from me following me falling asleep behind the wheel of my car, read more about this here.

I took a vow a few weeks ago that this blog was going to be COVID-19 free but it's so hard to keep away from it. Share on X

I took a vow a few weeks ago that this blog was going to be COVID-19 free but it’s so hard to keep away from it.

What am I going to do with myself now I can’t do my job? The words I have heard a few times in the last week.

I know just how frustrating it will be having left my job because of overwhelming fatigue and lack of cognitive ability. This is now majorly improved through talk typing and Grammarly try it you won’t look back.

I digress

Anyway, I digress though this is about how this is affecting me it is also about how it’s affecting my friends, family and ex-colleagues, I would imagine ex-colleagues are majority working from home as they are classed as key workers. As would I have been if I was still there.

I would have been thrilled to hear of Health Centre’s having their windows smashed at 3 am when the staff inside are trying to provide an out of hours GP service. Scum still keeps rising even at a time like this.

However, I found things to occupy my time, the main and most important thing I did was start this blog.

I am seeing workers putting down their work phones, deleting work emails and suddenly realising there is life away from work, as someone that was as guilty of this as anyone it’s a tough thing to do but all of us have to keep a work-life balance because when that work finishes for whatever reason that’s when you find yourself with nothing to do.

Isolation

MS awareness month has slid by without notice because of COVID-19 but with MS and chronic illness, it is easy to feel isolated suddenly friends and family are still doing things you can no longer do, but this isolation is different because it affects us all.

Picture with orange ribbon centre and March is MS Awareness Month in words

Though according to the government I am not classed as being in an at-risk group, I know myself how my MS reacts to stress and any changes such as a virus so I am happy to self isolate for that reason alone.

I am used to a form of isolation, I am not used to having my groceries delivered to my door and not being able to open it. Share on X

What I hope for

What I hope comes from all of this is that people start to have some understanding of how difficult it is for people with chronic illness to miss out on doing the things they love, though at the moment there is not much chance of FOMO as everything has either been postponed or cancelled.

But more than anything people keep on looking out for their friends and neighbours, too many of us have lived in bubbles of our own lives if this virus has taught us anything it is that people have been made to stand up and take notice of their surroundings.

I am now in so many WhatsApp support groups, from my dentist to the local parish council and more in between, it is so lovely to know that people are there to support you.

There will always be those idiots who selfishly go about doing what they want to do without thought for others, but I am sure they will be very much in the minority.

He began to speak

So when the boredom overtakes us we are fortunate to be able to video call, attend Zoom Meetings, talk to people on the phone, WhatsApp, Facebook Messenger there are just so many ways for us to speak, Pop Quizzes, House Party, Friends Quizzes, Pub quizzes, get the old board games out, use this time to reconnect with people and appreciate the world outside.

Its something I do now so much more than I ever did.

We will get through this

I don’t know how many of us will come through this, many peoples lives will change for good, be that work, relationships, or just how we suddenly see things differently.

I do believe we need to keep up with the support groups we have created and found and stop walking around in our little bubble.

Picture on a green background with a house and the words stay safe stay home

Rach!xxx

If you need support with your MS both the MS Society and MS Trust are reaching out every day, the MS Society has Zoom chat you can book through Eventbrite, and these at least three times a week.

ShiftMS has fabulous resources along with chat groups and forums.

The Mighty covers all forms of chronic and invisible illness, by making health about people.

As does Wego Health who I am an MS Patient Leader for.

I need to pray

March 22, 2020 Leave a Comment

“I need to pray”, not words I would imagine coming into my thoughts during my childhood when I felt I was forced to follow a religion, that religion being C of E, both my Grandma and my Mum were regular churchgoers, Grandma also held garden parties and Mum arranged the church flowers.

My sister and I were brought up on Sunday school and the church choir and were both confirmed at 13 years old. Share on X

My sister and I were brought up on Sunday school and the church choir and were both confirmed at 13 years old.

Grandma often quoted the bible, usually when she was telling either me or my sister off for something she didn’t approve of.

My Rebellion

I am not sure at what age I rebelled against this but that was me and still is today if I’m honest if I don’t want to do something that is my response. Previous bosses would tell you if I like to do something it gets done quickly if I don’t then it gets held back, I will still do it but not prioritise it as it should be sometimes.

Anyway, I would imagine it would be at the time when I started to follow Hull FC away games, therefore it clashed with going to church so I would have been about 14.

Then followed many years of ticking the box as an atheist, but I now know that was never true as I have always believed there was something there just never really sure what.

Praying for you

Yet every time someone is ill or loses someone, every time a pet is ill or someone loses a pet, the main response is “I am praying for you” from both me and others.

What am I praying for you might ask, the non-believer me, I could say that it is just a platitude but I know it's not so, therefore, I must believe. Share on X

What am I praying for you might ask, the non-believer me, I could say that it is just a platitude but I know it’s not so, therefore, I must believe.

St Augustines Church Skirlaugh at sunset — St Augustines Church – Skirlaugh

Though I live right next door to the church above I haven’t been through the doors since I moved in, but when the vicar announced on Facebook yesterday that there would be no more services for the time being it suddenly hit me how real everything is becoming.

Pin with the wording I almost have the urge to just go and sit in the church for some reason, it is still open during the day for quiet prayer or just to light a candle. on a black background with a candle in the foreground

I almost have the urge to just go and sit in the church for some reason, it is still open during the day for quiet prayer or just to light a candle.

Why has it taken me so long to look at this? Is it the MS, is it a fear of mortality, is it just me getting older, I wish I knew the answer. What I do know though is it is something I suddenly feel quite strongly about.

My first service

This is what I took from the service “Be there for one another, have the grace to let others be your servant” It’s ok to be vulnerable and let people help you.

"Be there for one another, have the grace to let others be your servant" It's ok to be vulnerable and let people help you. Share on X

I am looking forward to Sunday service now, even if it’s just a distraction to everything that is going on in the world.

Wash your hands and stay safe!

Rach!xx

Saying no to you is saying yes to me

March 15, 2020 1 Comment

As a natural empath, I have always been used to being the kind of person who people talk to and share their woes, problems or evens whinges, now I am saying no.

You will know from other posts and the main reason I no longer work my cognitive ability is not what it was. Share on X

You will know from other posts and the main reason I no longer work my cognitive ability is not what it was.

Now this is going to sound harsh and yes I do feel guilty for saying it or even thinking it, but if you knew what it takes me to concentrate on my own stresses and problems you might understand that I can’t take on other peoples too.

What are the signs

My way of dealing with things has always been to roll myself up into a ball and hide away, most of you won’t even know that I do this because it’s not anything I have shared before other than in a therapy session.

Gone are the days when I used to thrive on pressure to get me through the day, now I turn away from it instantly.

So yes the signs, the signs for me are when I turn notifications off on my phone meaning if I don’t know you are there I can’t stress over it. I do have certain numbers that are not silenced, Mum, Lucie and Jessica for example but sorry no one else is added to the exclusion list.

Where do I go

I go off to a place in my head that cuts off the outside world, it usually involves reading, listening to music/podcasts or binge-watching Netflix but you can guarantee I won’t be looking for messages.

It has taken many therapy sessions to get to this stage, so yes please don’t think I am rude if I can’t help you deal with your problems, I am just saying yes to me.

How do I feel

I feel guilty as hell that I can’t be there for people, that I can’t solve their problems, that I can’t point them in the right direction, I missed a valid point while supporting a friend recently by not picking up on something that was staring me in the face and could have caused no end of problems for that friend.

My mind just doesn’t process information like it used to, it’s one of the things that upsets me most about this illness because I have always prided myself on the quick thinking and problem solving and while I am dealing with your problems I can’t deal with my own.

What happens next

I will be saying no, just know that it has taken me an awful lot to get to this stage and while I would never turn someone away if I use the words “my mind doesn’t have the capacity to deal with this at the moment, but I am sure if you speak to or message so and so they will be able to help you far better than I can.” Know that I am at a stage where I can’t help you because doing so will put me under stress which in turn exacerbates my condition.

I am saying no!

Endometriosis – there is still no cure

March 9, 2020 11 Comments

“Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation.” The official line.

The main symptoms of endometriosis are:

Pain in your lower tummy or back (pelvic pain) – usually worse during your period
Period pain that stops you doing your normal activities
Pain during or after sex
Pain when peeing or pooing during your period
Feeling sick, constipation, diarrhoea, or blood in your pee during your period
Difficulty getting pregnant

As March is Endometriosis Awareness Month, I am sharing my story by using Sheryl's March linkup. Share on X

As March is Endometriosis Awareness Month I am sharing my story by using Sheryl’s March linkup.

My first experience of excruciating period pain and menstrual flooding was at 14 years old. How embarrassed and scared was I to have to ask the School bus driver to take me back home because I had leaked all over my underwear and clothing.

I still remember the day as if it was yesterday because the driver couldn’t take me all the way home, so dropped me off in the village nearest to where I lived. Gingerly I made my way to the first house where I thought someone might be in and knocked on the door.

The door opened, and a lady greeted me, and I burst into tears.

Thankfully, she took me into her house and let me ring my dad, who came and collected me. Share on X

Thankfully, she took me into her house and let me ring my dad, who came and collected me.

The following day I went to see my GP and I can still remember this rotund elderly man telling me it was what happened to women and I just had to get on with it.

Contraception

Photo of sleeve of contraceptive pills on a table

As soon as I was old enough I opted to go on the contraceptive pill just because I believed it would make my periods lighter and though it helped it still didn’t manage my pain.

I continued on the pill for just short of ten years and at 22 they diagnosed me with a DVT in my leg which they informed me it had happened from taking the pill, so I had to stop taking it straight away.

Shortly after, the heavy bleeding started again along with the pain.

Endometriosis Diagnosis

My sister lived next door to a Gynaecologist and after chatting with him, he agreed to see me in his clinic.

Going along to his clinic a week later, he took some blood, carried out an internal examination and then sent me off for an ultrasound. When I came back into his room, he explained to me he was working on research about a very hard to diagnose condition called endometriosis, and he believed it was possibly what I had.

A couple of weeks later he booked me in for a laparoscopy where he confirmed I had endometriosis and he removed what he could, but he advised me that sadly it could come back.

Over the next few years, I tried all different options to stem it; I suffered three miscarriages, the final one in February 2003 when I had to give birth.

At that point, I went back to see the gynaecologist, and he advised me to have the Mirena Coil fitted as it would stop my periods altogether, so hopefully, it would keep the scar tissue at bay. I also had to decide I would never have a child because the only options to keep the endometriosis at bay were contraceptives.

I was 37 and even though my periods stopped, I still had all the pain in my stomach and back, suffered from PMT, fatigue and sex had been painful for as long as I could remember, I had pain on weeing and pooing and it was having an adverse effect on my mental health.

Further Treatments

At 45 after trying two Mirena Coils, a contraceptive implant, the depo-provero injection, nothing was working, so they offered me my last shot of endometrial ablation. My gynaecologist advised the only step available after this was a hysterectomy.

I probably got about 3 months’ relief from the ablation and it was just at the time for my follow up appointment that I struggled again, so I made the decision that the only thing left was a hysterectomy.

I put it off for just over a year because there was a big restructure happening at work and I didn’t want to lose my job because I would need 3 months off sick.

Initially, I received a date for September 10th 2013; I remember this because it would have been my birthday two days later.

On the 21st of July 2013, I had my first collapse at work, which was treated as a suspected TIA. It was only five years later that I would find out this was their first suspicion of MS. I digress, but this resulted in having to postpone my hysterectomy for 6 months.

Hysterectomy

On the 7th January 2014 my gynaecologist performed a radical hysterectomy, my womb and surrounding tissues were removed, including the fallopian tubes, part of my vagina, ovaries, lymph glands and fatty tissue. He even had to detach one of my ovaries from my bowel, and he spent over an hour removing the rest of the scar tissue (endometriosis).

I saw him again two weeks later because I was in so much pain and even opioids weren’t touching it. He explained just how much he had taken away and said I would be in pain while it healed up inside.

Ironically, once again at work, we were going through another restructure, (NHS for you), so I asked him to only sign me off for six weeks, not the eight he was advising.

The hysterectomy sent me straight into menopause; I wasn’t even perimenopausal beforehand, so on top of trying to manage my pain I was also having to cope with the hot sweats and all the menopausal symptoms you could imagine, but I still went back to work after six weeks.

In hindsight, it took me well over a year to feel some kind of normal again and thankfully at 53 years old I still don’t have any signs of the endometriosis returning even though it could.

Still difficult to diagnose

Endometriosis is still very difficult to diagnose even all these years on, I feel very fortunate that I had access to a gynaecologist who possibly used me as a test case but all the same he stayed with me right up to the end and even though he didn’t perform my hysterectomy, a member of his team did, the main thing was he believed me and he took me seriously right from the start and for that I am forever grateful.

A little sad

Black and white photo of womens legs sat down with hands folded

I am sad though, and maybe more so now than I was then, but I never had a child. No one ever said endometriosis was the reason for my miscarriages, but I have to believe it can’t have helped.

In the early days, one of my GPs even suggested getting pregnant might help, I didn’t have any problems getting pregnant I just couldn’t hold on to them so deciding to stop trying was the only option I felt was open to me.

If you resonate with any of the above, keep pushing medical staff as it still isn’t the first thing they look for and I believe there are so many undiagnosed.

Chat to me in the comments and thanks for reading.

Resources

Rach! xx

Today I am Tired

March 2, 2020 2 Comments

Today I am tired This is a post I wrote just over a year ago when I was still in my old home.

Today I am tired, tomorrow I will be tired too, this isn’t a have a quick ten minutes, a Costa coffee, a sugar rush and I will be fine tired.

This is tired, that means at times I struggle to put one foot in front of the other tired, this is a tired that affects my balance, my limbs, my bladder/bowels, it’s a tired that means my limbs spasm so painfully I scream out loud even if only to myself, it’s tired that creates pain in places I didn’t know existed, it’s tired that causes a hug so tight in my chest I feel like it might explode.

This illness that has taken, my job, my driving licence, my sense of self-worth, my social life now appears to be taking my home. Share on X

This illness that has taken, my job, my driving licence, my sense of self-worth, my social life now appears to be taking my home.

My mobility isn’t going to get any better I now accept that and after struggling to have a shower last week I finally realised that to keep clean, which is imperative for me, it isn’t taking that away from me to, means I now need a walk-in shower/wet room which is not available in this house and in all honesty, I also must wonder how much longer I can get up the stairs.

Photograph of stairs with a blue carpet, white walls and bannisters on both sides

I have an extra bannister which helps, but it’s not a run up the stairs when I need too like it once was, I remember once upon a time I was always breaking my big toenails because of the speed I would go up, and that’s not that long ago really.

Cleaning Company

A few weeks ago, I decided to get a cleaning company in to clean the house from top to bottom in the hope that once it was done it would be easier to keep on top of. That proved harder than I thought it was going to be, as I contacted three companies and not one of them rang me back. Finally, after contacting a fourth last week I have someone starting tomorrow, they are coming to bottom the place out and then set something up on a weekly/fortnightly basis to keep on top of it.

Pin me to read later.

On Friday I decided to clear out my unit in the living room. Now, this unit has been in situ for 12 years, so you can imagine the rubbish that has gathered in it. I didn’t even realise how much was in there myself, but what I did know in the glass display part of it was some very old china that was my Grandmas so that is all safely boxed up ready for whatever I do with it next.

You don’t realise how much you gather along the way, the majority of it was rubbish, I filled two boxes and 2 bags full, and that was only the unit, so no idea what is going to be in the rest of the house.

What really surprised me though was how ill this made me feel, my vertigo and my balance issues seemed to go through the roof, every time I bent down and got back up again I felt dreadful.

Having managed to secure a removal firm the van turned up at 6.30 pm to dispose of the unit and a three-seater sofa and all the rubbish and I am sure they will be back again real soon.

By the time they left I felt sick, my limbs felt like lead blocks so decided the best option was to go to bed.

The result

At 2.30 am I woke up knowing I was going to be sick, I managed to get to the bathroom in time and this continued on and off until about 5.30 am, this was the result of bending up and down with vertigo, I felt dreadful and it was only when someone from a group I am in advised me to take sips of water and sit with my legs raised that I finally managed to stop it.

The last time this happened I ended up in the hospital for two days, there was no way I was doing that again unless necessary so just kept trying to keep my fluids up to stop me dehydrating.

Going forward

The worry now this is just the start of this process, but it is my stuff, so I still have to have a say in what stays and what goes, but I really can’t go through that every time we try to clean a room out.

Still don’t know what the answer is, but I have over 700 friends according to Facebook maybe I ought to ask one of those to help me. But they are all busy leading their own lives to worry about what little old me is doing or needs doing.

Don’t get me wrong there are a few I can call on and a few who help most of the time, not least my wonderful friend who cooks my Sunday lunch every week, but in all honesty, I can count on one hand how many have offered help of any kind since I have been ill, my dog walker has done more for me in the last year than anyone else other than family, which I suppose kind of says something.